Asperger's in Adolescence Participant Study Results~FYI

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Our family participated in a study conducted by a known Dr. & University here in Ontario. After several years of investigation, research and studies, they have recently produced the results from the study.

Below are the results:

"Following two full years of data collection and analysis, I’m happy to announce that the Study on Asperger Syndrome in Adolescence has been concluded and we can offer you some information on our findings.

As you know, Dr. M. M. Konstantareas (faculty advisor) and I chose to investigate several aspects of the Asperger Syndrome (AS) profile, in order to determine if and how those aspects change in presentation as a child moves through adolescence. We chose to examine 3 facets of the AS profile: (1) AS features; (2) mental health/behavior; and (3) temperamental characteristics. Each of these areas will be discussed in turn below, with significant findings highlighted.

First, let me share a brief description of the study’s sample. Sixty-seven families completed at least a portion of the study, and 62 families provided full information. Though we had interest from families across the country, the families that completed the study were primarily from larger urban centres in Ontario and were of at least middle class socioeconomic status. The 53 male and 14 female child participants ranged from 7 to 17 years of age. Most had been diagnosed with AS between 6 and 10 years of age, and diagnoses were offered almost equally be pediatricians, psychologists and psychiatrists. Most of the children (60.6%) were described as attending regular classrooms and receiving periodic support for learning or behavior. Many of the children had received occupational therapy (68.9%), social skills therapy (65.6%) and speech/language therapy (41%). These were the three most common forms of therapy indicated by parents.

Now I will provide a brief summary of the findings of the study. Please note that these results describe the entire sample, and may or may not be similar to what you see in your child.

(1) AS Symptoms

AS is characterized by notable behaviors in a number of areas of functioning, including social interactions and the way in which language is used. When direct observation is not possible, information regarding these behaviors can be collected via questionnaire. For the present study, parents were asked to complete the Gilliam Asperger’s Disorder Scale (GADS) to provide such information.

The GADS’ scores are to be interpreted as suggesting a probability of AS. For example, Asperger’s Disorder Quotient scores of 69 or lower suggest a low probability that the child will be diagnosed with AS, while scores of 80 or higher indicate a high probability of AS diagnosis. The mean score for our sample was 97.29, suggesting a high probability of AS for the study sample. Further results indicated that the presentation of AS symptoms does not differ according to the child’s sex or age, suggesting that features that are indicative of AS are evident by 7 years of age and do not change significantly as a child moves into and through adolescence.

(2) Mental Health/Behavior

Researchers and clinicians have stated that adolescence is a particular time of vulnerability for those with AS, due to the fact that social skill challenges can affect the ways in which kids with AS develop peer relationships. According to published research and clinical accounts, individuals with AS are at high risk for experiencing depression and anxiety during this developmental period. However, much of this information has been provided by parents and other caregivers. We collected information from both parents and children complete questionnaires regarding their moods and behaviors. Parents completed versions of the Behavior Assessment System for Children, Second Edition (BASC-2), and children were asked to complete the Revised Children’s Manifest Anxiety Scale (RCMAS) and the Children’s Depression Inventory (CDI).

Parent reports on the BASC-2 indicated that children and adolescents with AS demonstrate more internalizing behaviors than externalizing behaviors, which means that they are more likely to experience symptoms of anxiety and depression than demonstrate aggression or oppositional behavior. Parent reports also suggested that male children demonstrated fewer signs and symptoms of anxiety than did female children. There were very few differences in parent reports of children’s behavior that were associated with the age of the child. However, withdrawal behaviors, such as remaining outside of peer groups, were more frequently reported in older children and adolescents. It is likely that difficulties in social interactions that are key to AS affect an individual’s ability to develop appropriate peer relationships. In adolescence, relationships with friends begin to become more central than relationships with family members, and it appears that children and adolescents with AS have significant difficulty with that aspect of typical development.

High scores on the BASC-2 are categorized as demonstrating different levels of risk, and the highest scores are described as suggesting clinical significance. This does not mean that a child meets any sort of diagnostic criteria for Attention-Deficit/Hyperactivity Disorder if he or she is demonstrating clinically significant levels of hyperactivity as measured by the BASC-2. However, such a high score may warrant further investigation by a qualified mental health professional. For children between 6 and 11 years of age, a full 26% of the sample was in the Clinically Significant range for depressive symptoms, while 48% of the sample was in the Clinically Significant range for anxious symptoms and withdrawal behaviors. For adolescents between 12 and 17 years of age, the results were similar. Clinically Significant scores were obtained for 29% of the sample in regard to depressive symptoms, 57% for anxious symptoms and 77% for withdrawal behaviors. These results clearly show that children and adolescents diagnosed with AS are a high risk for depression and anxiety. Though no statistically significant results were found in regard to changes with age, with the exception of withdrawal behaviors as discussed above, our findings do show a trend suggesting that these internalizing behaviors do become more frequent in adolescence, at least according to parent report.

Children’s reports of their own feelings and behavior were quite different than those reports offered by parents, and there were only moderate correlations between the two sets of reports. Reports of anxious symptoms did not differ according to the child’s sex or age. When we considered the proportion of scores categorized as being Clinically Significant, we noted that only 3.7% of children between 6 and 11 years of age provided high scores, and that figure increased to 18.4% when we examined adolescents between 12 and 17 years of age. Those numbers are very low compared to parent report of their child’s behavior, and offer some support to the notion that one feature related to AS involves difficulty recognizing and reporting on one’s own mental states. We have to question whether the children are experiencing anxious symptoms and simply cannot provide reports of it, or whether the children’s reports are accurate and they are not experiencing the same intensity of feeling as their parents interpret.

Similar results were found regarding children’s reports of depressive symptoms. Female children reported experiencing more feelings of depressive symptoms than did male children, but these reports did not differ with the child’s age. No children between 6 and 11 years of age offered Clinically Significant scores, and only 11% of adolescents between 12 and 17 years of age offered high and Clinically Significant scores.

Two questions were added to the end of the RCMAS, and involved children’s fears and perception of difference from other children. The first required children to indicate whether they felt different from other children since learning of their AS diagnosis, whether they had always felt different from other children, or whether they felt no different from other children. A full 23 percent of the sample indicated that they felt no different from other children, and another 23 percent reported that they felt different since they learned of their AS diagnosis. More than half the sample (54%) indicated that they have always felt different than other children. Further analyses suggested that children who reported always feeling different also reported experiencing higher levels of anxious and depressive symptoms. Interestingly, the children’s perceptions of difference were not related to parent reports of their behavior.

The second question asked children to list things that made them feel nervous. This is known as a fear list procedure, and all of the responses were then categorized into 5 types of fears. Fears of the unknown were predominant in the responses we received, followed by fears of failure and criticism, school/medical fears, fears of death and danger, and finally, animal fears. These results suggest that children with AS are particularly nervous about those aspects of the world that they cannot predict or change. The prevalence of these fears may be related to the high levels of anxious behaviors that are observed by parents.

(3) Temperament

Temperament refers to biologically based individual differences in a number of areas, such as self-control, emotional regulation and attention. In general, higher levels of activity and emotional expression, as well as lower levels of self-control and attention, are associated with what can be difficult-to-manage behaviors, such as aggression and conduct problems. Very little work has been done to determine if there is a specific temperamental profile associated with AS, though there are several published studies describing certain temperamental characteristics of individuals diagnosed with other autism spectrum disorders.
In order to gather information regard patterns of child behavior, parents were asked to complete the Dimensions of Temperament Survey – Revised (DOTS-R). The primary finding was that children diagnosed with AS consistently demonstrate behaviors that are low in approach and high in withdrawal, meaning that these children are more likely to take more time to warm up to new people and new experiences, and may also demonstrate some behaviors that keep them isolated from peers or even family members. These behaviors were associated with parent reports of internalizing behaviors, such as anxiety and depression, as well as child-reported anxiety. As this was preliminary research, the question remains as to the nature of the association. For example, future research along these lines can attempt to determine whether this temperamental characteristic is related to the roots of AS, and whether this style of responding to the world around them is seen in all individuals diagnosed with AS.

Though our study examined only a few facets of AS, we believe that the information we are able to present will give us a better understanding of AS during the period children move through adolescence and prepare for adulthood. In any event, the findings of the study have implications for clinical practice and interventions. It is necessary for those involved with these children and adolescents to be aware of the high risk for depression and anxiety. This includes family members and school staff. School administrators and teachers should be provided with information regarding the unique needs of children and adolescents diagnosed with AS, and schools should strive to become supportive environments that are able to facilitate inclusion both inside and outside of the classroom. Viable options for individual or group counseling should be made available to parents and children in all areas. Finally, while clinicians are becoming more aware of the clinical presentation of AS, they must also be vigilant in observing these mental health risk factors and offering the right type of support at the right time."